We live and breathe our family's motto "Don't Give Up. Give Back." every day. It means persevere in the hardest of times…never give up hope. If you find yourself in a place where you think you may be losing hope, give to others. It takes the focus off yourself and helps people in need. We hope that you join us on our journey and help create a vibrant community willing to give of themselves to make the world better. It is up to each of us to live a life full of hope and of purpose to make a difference in the lives of others.
Our daughter Olivia Hope (Livy) and her twin sister Hailey were born in December of 2004. Livy was born with a brain malformation that resulted in epilepsy, cerebral palsy and other disabilities. Livy's first seizure occurred only hours after birth. She spent the first nine months of her life at All Children's Hospital in St. Petersburg, Boston Children's Hospital and the Suncoast Hospice House in Largo, FL. She finally came home to us in September of 2005.
Throughout the first year of Livy's life, we were tested both physically and emotionally. That test continues to this day. Livy has undergone two major brain surgeries to try and alleviate her seizures. She has had many hospital visits due to uncontrolled seizures, broken bones and other various medical issues. She is not able to walk or talk and she is completely reliant on her family for care. What we find so amazing is that despite all she has been through, she is one of the happiest little girls we have ever seen. Her smile radiates love and she welcomes everyone she meets with a warm, glowing demeanor.
Hailey has learned more from Livy than we could ever teach her. We are constantly worried that Hailey will resent the fact that she didn't have a typical childhood filled with loud parties, long family vacations and other things kids usually do. Livy has created a new normal for our whole family. But when we ask Hailey if she misses certain activities, she says she wouldn't have it any other way. She is more empathetic and compassionate than we ever could have hoped.
Livy and Hailey were the inspiration for the creation of Livy's Hope. As Hailey tells the story, she says "I heard my mom and dad talking about how to raise money for Livy's expensive physical therapies. So I told them that I wanted to help, too." Hailey immediately started making bracelets and painting pictures that she auctioned on eBay. It seemed every day she was putting together a new creation and always said she would do anything to help Livy. It is a truly beautiful story of the love and dedication shared between sisters.
At one point, we all sat down and discussed how we could start helping others. We had met many over the years who had helped us and we knew that it was time to start giving back. So together, we made the decision to contribute profits from items we sold on Livy's Hope to the community through non-profit organizations. We continue this today and plan to give more as we grow.
Along the way, we have supported many amazing charities and held numerous events. We created Lemonade for Livy and the Kids Crew as ways to give back. Both are now national campaigns managed by the Epilepsy Foundation. Lemonade for Livy is an awareness and fundraising effort and the Kids Crew focuses on empowering kids to learn about epilepsy, create epilepsy awareness, educate and inspire others, and give back to the community. We also focus on giving to special needs schools. Livy attends one and we have seen how amazing the students, parents, and faculty are. Schools like Livy’s rely on state funding and often, it falls short. We want to help fill that gap so students have the chance to live to their fullest potential.
Livy presents us with new challenges every day. As she matures, it affects her seizures. As she grows, it becomes harder to take care of her physical needs. We have accepted that she will never walk and likely never talk. But her smile and her will to live is what inspires us. She is what motivates us to make a difference in peoples’ lives. Our journey of "Don't Give Up. Give Back." will continue to guide us. We ask that you come along for the ride and help change the world. Always remember that hope is all around us. You just have to believe!